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Clear Margins and No spread to Lymph Nodes. Now What?

Forums Pediatric & AYA Melanoma Community Clear Margins and No spread to Lymph Nodes. Now What?

  • Post
    Ross’s.Mom
    Participant

      I posted on here the end of Sept. about my 11 year old son's recent melanoma diagnosis. He underwent the wide excision biopsy and sentinel lymph node biopsy on 10-4. Path reports came back with clear margin at the tumor site (his ear) and no spread to lymph nodes. He had reconstruction surgery with full skin thickness skin graft on 10-13. After the clear path report it was simply a, "Great news, we'll follow up in a month in the clinic. No further treatment." Maybe I am being paranoid, but I am unsettled with that. You are thrown in to this children's cancer world and then just like that they say we are done. PLEASE do not get me wrong, we are so relived with his path results! But, we question if there is any further therapy (immunotherapy??) or tests/scans that should be completed. I guess I am wanting a second opinion from a pediatric melanoma specialist- someone with experience treating ped melanoma- his Dr has only had 3 pediatric melanoma cases in 10 years. I am not second guessing the procedures up until now… I am second guessing the going forward and if there is anything else we could/should be doing. Clinical trials? Research? Does anyone have any insight or similar situation to share? I have put in a consultation request at St. Jude's and am waiting to hear back. 

       

    Viewing 14 reply threads
    • Replies
        kathycmc
        Participant

          I don't believe there are any treatment options or even trials for stage II melanoma.  I know it doesn't feel right to just do nothing so I would proceed with finding a pediatric melanoma specialist if possible.  Even if it is just for a consultation it would be helpful for your peace of mind.  

          kathycmc
          Participant

            I don't believe there are any treatment options or even trials for stage II melanoma.  I know it doesn't feel right to just do nothing so I would proceed with finding a pediatric melanoma specialist if possible.  Even if it is just for a consultation it would be helpful for your peace of mind.  

              Ross’s.Mom
              Participant

                And that is another question- they never gave us a clear staging or classification of his specific type of melanoma. Does the Stage T3a from original biopsy have anything to do with the staging now? Right. It totally does not feel right to do nothing. It's been a month of high anxiety and worry and running every possible scenario through our heads… and now it's just dropped. I need to decompress. sad

                Ross’s.Mom
                Participant

                  And that is another question- they never gave us a clear staging or classification of his specific type of melanoma. Does the Stage T3a from original biopsy have anything to do with the staging now? Right. It totally does not feel right to do nothing. It's been a month of high anxiety and worry and running every possible scenario through our heads… and now it's just dropped. I need to decompress. sad

                  Ross’s.Mom
                  Participant

                    And that is another question- they never gave us a clear staging or classification of his specific type of melanoma. Does the Stage T3a from original biopsy have anything to do with the staging now? Right. It totally does not feel right to do nothing. It's been a month of high anxiety and worry and running every possible scenario through our heads… and now it's just dropped. I need to decompress. sad

                    Treadlightly
                    Participant

                      Based on what I have read of Ross' pathology, it sounds like he is either Stage 2A or 2B…depending upon whether his melanoma was "ulcerated."

                      The stage is determined by depth, ulceration, and whether the cancer has spread beyond just the skin.

                      https://www.melanoma.org/understand-melanoma/diagnosing-melanoma/stages-of-diagnosis 

                      In either case, Stage 2 does not usually result in further treatment. 

                      I was Stage 2A and I also had a full thickness skin graft 6 years ago…and I am still NED and living a very normal and full life.

                      It is a little disheartening that your doctor did not make it clear to you the current stage of Ross' Melanoma. My doctors did not tell me my stage either. I think this is because the stage is only determined upon the outcome of the Sentinal Lymph Node Bipopsy (SLNB). In my case…I got a call from the doctor's office telling me that my SLNB lymph nodes were clear, but they did not indicate the stage of my melanoma at that time. I had to follow-up with a call to my doctor to confirm what I believed my stage to be…based upon the information that I was able to find online. I have heard others tell similar stories, so I suspect this is a wide-spread practice…doctors not providing clear follow-up communication to their patients regarding cancer staging.

                      At this point…it certainly can't hurt for you to get a second opinion from a cancer center that has more experience with pediatric patients.

                      I am not sure if Ross' young age will make a difference, but the odds are in his favor based upon catching his melanoma at this relatively early-stage. 

                      Best of luck to you…and more importantly…to Ross!

                      Mark

                      Treadlightly
                      Participant

                        Based on what I have read of Ross' pathology, it sounds like he is either Stage 2A or 2B…depending upon whether his melanoma was "ulcerated."

                        The stage is determined by depth, ulceration, and whether the cancer has spread beyond just the skin.

                        https://www.melanoma.org/understand-melanoma/diagnosing-melanoma/stages-of-diagnosis 

                        In either case, Stage 2 does not usually result in further treatment. 

                        I was Stage 2A and I also had a full thickness skin graft 6 years ago…and I am still NED and living a very normal and full life.

                        It is a little disheartening that your doctor did not make it clear to you the current stage of Ross' Melanoma. My doctors did not tell me my stage either. I think this is because the stage is only determined upon the outcome of the Sentinal Lymph Node Bipopsy (SLNB). In my case…I got a call from the doctor's office telling me that my SLNB lymph nodes were clear, but they did not indicate the stage of my melanoma at that time. I had to follow-up with a call to my doctor to confirm what I believed my stage to be…based upon the information that I was able to find online. I have heard others tell similar stories, so I suspect this is a wide-spread practice…doctors not providing clear follow-up communication to their patients regarding cancer staging.

                        At this point…it certainly can't hurt for you to get a second opinion from a cancer center that has more experience with pediatric patients.

                        I am not sure if Ross' young age will make a difference, but the odds are in his favor based upon catching his melanoma at this relatively early-stage. 

                        Best of luck to you…and more importantly…to Ross!

                        Mark

                        Treadlightly
                        Participant

                          Based on what I have read of Ross' pathology, it sounds like he is either Stage 2A or 2B…depending upon whether his melanoma was "ulcerated."

                          The stage is determined by depth, ulceration, and whether the cancer has spread beyond just the skin.

                          https://www.melanoma.org/understand-melanoma/diagnosing-melanoma/stages-of-diagnosis 

                          In either case, Stage 2 does not usually result in further treatment. 

                          I was Stage 2A and I also had a full thickness skin graft 6 years ago…and I am still NED and living a very normal and full life.

                          It is a little disheartening that your doctor did not make it clear to you the current stage of Ross' Melanoma. My doctors did not tell me my stage either. I think this is because the stage is only determined upon the outcome of the Sentinal Lymph Node Bipopsy (SLNB). In my case…I got a call from the doctor's office telling me that my SLNB lymph nodes were clear, but they did not indicate the stage of my melanoma at that time. I had to follow-up with a call to my doctor to confirm what I believed my stage to be…based upon the information that I was able to find online. I have heard others tell similar stories, so I suspect this is a wide-spread practice…doctors not providing clear follow-up communication to their patients regarding cancer staging.

                          At this point…it certainly can't hurt for you to get a second opinion from a cancer center that has more experience with pediatric patients.

                          I am not sure if Ross' young age will make a difference, but the odds are in his favor based upon catching his melanoma at this relatively early-stage. 

                          Best of luck to you…and more importantly…to Ross!

                          Mark

                        kathycmc
                        Participant

                          I don't believe there are any treatment options or even trials for stage II melanoma.  I know it doesn't feel right to just do nothing so I would proceed with finding a pediatric melanoma specialist if possible.  Even if it is just for a consultation it would be helpful for your peace of mind.  

                          SABKLYN
                          Participant

                            Hi 

                            First, that is GREAT news.  Secondly, if this was diagnosed as state 3 initially, that is no longer valid as there is no lymph node involvement.  Sounds like the quicker you can get to a specialist, the better.  I'm really happy for you.  St. Jude's will give you a better view of what's available.in terms of other options.

                            SABKLYN
                            Participant

                              Hi 

                              First, that is GREAT news.  Secondly, if this was diagnosed as state 3 initially, that is no longer valid as there is no lymph node involvement.  Sounds like the quicker you can get to a specialist, the better.  I'm really happy for you.  St. Jude's will give you a better view of what's available.in terms of other options.

                              SABKLYN
                              Participant

                                Hi 

                                First, that is GREAT news.  Secondly, if this was diagnosed as state 3 initially, that is no longer valid as there is no lymph node involvement.  Sounds like the quicker you can get to a specialist, the better.  I'm really happy for you.  St. Jude's will give you a better view of what's available.in terms of other options.

                                ed williams
                                Participant

                                  Hi Ross's mom, I am going to give you a link that will help to explain some of your concerns about what to do and the staging. If you watch the first part of the video it will help to explain your present situation. At the 17:47 mark it give you the staging criteria and you will be able to see where T3a fits into things. Best Wishes!!!Ed    https://www.youtube.com/watch?v=eofW8d4J6sI

                                  ed williams
                                  Participant

                                    Hi Ross's mom, I am going to give you a link that will help to explain some of your concerns about what to do and the staging. If you watch the first part of the video it will help to explain your present situation. At the 17:47 mark it give you the staging criteria and you will be able to see where T3a fits into things. Best Wishes!!!Ed    https://www.youtube.com/watch?v=eofW8d4J6sI

                                    ed williams
                                    Participant

                                      Hi Ross's mom, I am going to give you a link that will help to explain some of your concerns about what to do and the staging. If you watch the first part of the video it will help to explain your present situation. At the 17:47 mark it give you the staging criteria and you will be able to see where T3a fits into things. Best Wishes!!!Ed    https://www.youtube.com/watch?v=eofW8d4J6sI

                                      cancersnewnormal
                                      Participant

                                        I understand your concerns, even following the very good news. Pediatric cancers don't always operate the same as childhood cancers. There is a melanoma referral clinic (all the info you could want and more!) that will be happening at St Jude Children's Research Hospital next month. Here is a link to the online info: https://www.stjude.org/treatment/patient-resources/resources-on-campus/melanoma-consult-clinic.html

                                        If that seems like more than you feel is needed, since the news was indeed very good… There is a phone number on there, which I'm sure you could call just to speak with a melanoma specialist from the hospital. If for no other reason than to put your mind at ease via phone or email. It certainly can't hurt to give them a shout. The phone number for the referral clinic info is: 901-595-6110… If they can't help you directly, I'm sure they can point you in the direction of someone who can. 

                                        When it comes to treating and researching pediatric cancers, they are the best. Hands down, the world's best. 

                                        cancersnewnormal
                                        Participant

                                          I understand your concerns, even following the very good news. Pediatric cancers don't always operate the same as childhood cancers. There is a melanoma referral clinic (all the info you could want and more!) that will be happening at St Jude Children's Research Hospital next month. Here is a link to the online info: https://www.stjude.org/treatment/patient-resources/resources-on-campus/melanoma-consult-clinic.html

                                          If that seems like more than you feel is needed, since the news was indeed very good… There is a phone number on there, which I'm sure you could call just to speak with a melanoma specialist from the hospital. If for no other reason than to put your mind at ease via phone or email. It certainly can't hurt to give them a shout. The phone number for the referral clinic info is: 901-595-6110… If they can't help you directly, I'm sure they can point you in the direction of someone who can. 

                                          When it comes to treating and researching pediatric cancers, they are the best. Hands down, the world's best. 

                                          cancersnewnormal
                                          Participant

                                            I understand your concerns, even following the very good news. Pediatric cancers don't always operate the same as childhood cancers. There is a melanoma referral clinic (all the info you could want and more!) that will be happening at St Jude Children's Research Hospital next month. Here is a link to the online info: https://www.stjude.org/treatment/patient-resources/resources-on-campus/melanoma-consult-clinic.html

                                            If that seems like more than you feel is needed, since the news was indeed very good… There is a phone number on there, which I'm sure you could call just to speak with a melanoma specialist from the hospital. If for no other reason than to put your mind at ease via phone or email. It certainly can't hurt to give them a shout. The phone number for the referral clinic info is: 901-595-6110… If they can't help you directly, I'm sure they can point you in the direction of someone who can. 

                                            When it comes to treating and researching pediatric cancers, they are the best. Hands down, the world's best. 

                                              cancersnewnormal
                                              Participant

                                                Ooops… blonde mind… coffee lacking blunder……….. I meant to say pediatric cancers don't always operate the same as ADULT cancers. Treatments can sometimes be vastly different. 

                                                cancersnewnormal
                                                Participant

                                                  Ooops… blonde mind… coffee lacking blunder……….. I meant to say pediatric cancers don't always operate the same as ADULT cancers. Treatments can sometimes be vastly different. 

                                                  cancersnewnormal
                                                  Participant

                                                    Ooops… blonde mind… coffee lacking blunder……….. I meant to say pediatric cancers don't always operate the same as ADULT cancers. Treatments can sometimes be vastly different. 

                                                    cancersnewnormal
                                                    Participant

                                                      Dr. Fariba Navid is a pediatric oncologist with a melanoma specialty. She works at St Jude as well as Univ of TN. I'm not sure how current this phone number is, but it's another shot at speaking to someone with better knowledge of your son's diagnosis. 901-595-3006

                                                      cancersnewnormal
                                                      Participant

                                                        Dr. Fariba Navid is a pediatric oncologist with a melanoma specialty. She works at St Jude as well as Univ of TN. I'm not sure how current this phone number is, but it's another shot at speaking to someone with better knowledge of your son's diagnosis. 901-595-3006

                                                        cancersnewnormal
                                                        Participant

                                                          Dr. Fariba Navid is a pediatric oncologist with a melanoma specialty. She works at St Jude as well as Univ of TN. I'm not sure how current this phone number is, but it's another shot at speaking to someone with better knowledge of your son's diagnosis. 901-595-3006

                                                          Ross’s.Mom
                                                          Participant

                                                            Thank you so much, Niki. This information is very, very helpful. I am conflicted because we saw a melanoma specialist at Uof I, but our son is only his 3rd pediatric case in 10 years. He said to us, it didn't matter Ross was a pediatric patient, "Melanoma is melanoma." But from what I have researched online, which I know is not always correct, childhood melanoma may act differently in kids than adults. I just want to speak with someone that has more experience before I can feel completely at ease. We just have so many questions about going forward and "what now" that I want someone that is a ped onc- melanoma specialty- to answer. I sent an email to St. Jude's melanoma referral email and am anxiously awaiting to hear back. Thank you again for taking time to respond!

                                                            -April

                                                            Ross’s.Mom
                                                            Participant

                                                              Thank you so much, Niki. This information is very, very helpful. I am conflicted because we saw a melanoma specialist at Uof I, but our son is only his 3rd pediatric case in 10 years. He said to us, it didn't matter Ross was a pediatric patient, "Melanoma is melanoma." But from what I have researched online, which I know is not always correct, childhood melanoma may act differently in kids than adults. I just want to speak with someone that has more experience before I can feel completely at ease. We just have so many questions about going forward and "what now" that I want someone that is a ped onc- melanoma specialty- to answer. I sent an email to St. Jude's melanoma referral email and am anxiously awaiting to hear back. Thank you again for taking time to respond!

                                                              -April

                                                              Ross’s.Mom
                                                              Participant

                                                                Thank you so much, Niki. This information is very, very helpful. I am conflicted because we saw a melanoma specialist at Uof I, but our son is only his 3rd pediatric case in 10 years. He said to us, it didn't matter Ross was a pediatric patient, "Melanoma is melanoma." But from what I have researched online, which I know is not always correct, childhood melanoma may act differently in kids than adults. I just want to speak with someone that has more experience before I can feel completely at ease. We just have so many questions about going forward and "what now" that I want someone that is a ped onc- melanoma specialty- to answer. I sent an email to St. Jude's melanoma referral email and am anxiously awaiting to hear back. Thank you again for taking time to respond!

                                                                -April

                                                              Momofjake
                                                              Participant

                                                                My son was 17. Start beating down doors. My best advice. Specialists. Not just in the country….I wish I had earlier. Jakes is 19. Stage 4. That said, it was in his lymphs day 1. And some people get clear margins and live happily ever after:) Prayers for yours to be this story. Still be educated. Sorry you are here. 

                                                                Kerri

                                                                Momofjake
                                                                Participant

                                                                  My son was 17. Start beating down doors. My best advice. Specialists. Not just in the country….I wish I had earlier. Jakes is 19. Stage 4. That said, it was in his lymphs day 1. And some people get clear margins and live happily ever after:) Prayers for yours to be this story. Still be educated. Sorry you are here. 

                                                                  Kerri

                                                                  Momofjake
                                                                  Participant

                                                                    My son was 17. Start beating down doors. My best advice. Specialists. Not just in the country….I wish I had earlier. Jakes is 19. Stage 4. That said, it was in his lymphs day 1. And some people get clear margins and live happily ever after:) Prayers for yours to be this story. Still be educated. Sorry you are here. 

                                                                    Kerri

                                                                      dnovak
                                                                      Participant

                                                                        First off, consider yourself and your son very lucky.  Positive lymph nodes usually result in lymphnode dissection followed by a year of interferon.  As the father of a child who went through both of these when she was 8 I can tell tell you that this is a nightmare that you should not wish on yourself.  There are a number of cancer centers that see more pediatric melanoma than most.  St Jude and MD Anderson are 2 big ones that you could get a 2nd opinion at, but I'm fairly certain they are going to advise watchful waiting.  Be happy about this, it is very good.  

                                                                        If if you want to interact with others who have been down this rabbit hole then search for Littlest Warrior Spot on Facebook and ask to be a member.  This is a closed group of pediatric melanoma parents who exchange information.   Last I checked there are around 100 in the group now, from stage 1 kids to stage 4.  Check it out…and be happy about these results–it's great news.  

                                                                        Good luck.  Dnovak.

                                                                         

                                                                         

                                                                         

                                                                        dnovak
                                                                        Participant

                                                                          First off, consider yourself and your son very lucky.  Positive lymph nodes usually result in lymphnode dissection followed by a year of interferon.  As the father of a child who went through both of these when she was 8 I can tell tell you that this is a nightmare that you should not wish on yourself.  There are a number of cancer centers that see more pediatric melanoma than most.  St Jude and MD Anderson are 2 big ones that you could get a 2nd opinion at, but I'm fairly certain they are going to advise watchful waiting.  Be happy about this, it is very good.  

                                                                          If if you want to interact with others who have been down this rabbit hole then search for Littlest Warrior Spot on Facebook and ask to be a member.  This is a closed group of pediatric melanoma parents who exchange information.   Last I checked there are around 100 in the group now, from stage 1 kids to stage 4.  Check it out…and be happy about these results–it's great news.  

                                                                          Good luck.  Dnovak.

                                                                           

                                                                           

                                                                           

                                                                          dnovak
                                                                          Participant

                                                                            First off, consider yourself and your son very lucky.  Positive lymph nodes usually result in lymphnode dissection followed by a year of interferon.  As the father of a child who went through both of these when she was 8 I can tell tell you that this is a nightmare that you should not wish on yourself.  There are a number of cancer centers that see more pediatric melanoma than most.  St Jude and MD Anderson are 2 big ones that you could get a 2nd opinion at, but I'm fairly certain they are going to advise watchful waiting.  Be happy about this, it is very good.  

                                                                            If if you want to interact with others who have been down this rabbit hole then search for Littlest Warrior Spot on Facebook and ask to be a member.  This is a closed group of pediatric melanoma parents who exchange information.   Last I checked there are around 100 in the group now, from stage 1 kids to stage 4.  Check it out…and be happy about these results–it's great news.  

                                                                            Good luck.  Dnovak.

                                                                             

                                                                             

                                                                             

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